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Report of the Expert Panel on Medical Need for Medical Card Eligibility SEPTEMBER 2014
Transcript

Report of the Expert Panel on Medical Need for

Medical Card Eligibility

SEPTEMBER 2014

2

TABLE OF CONTENTS:

FOREWORD BY THE DIRECTOR GENERAL OF THE HEALTH SERVICE, MR TONY O’BRIEN 3

FOREWORD BY THE CHAIR OF THE EXPERT PANEL, PROFESSOR FRANK KEANE 4

EXECUTIVE SUMMARY 5

1. INTRODUCTION 11

2. ETHICAL PERSPECTIVE 18

3. THE CURRENT MEDICAL CARD SYSTEM IN IRELAND 26

4. THE VOICE OF THE PUBLIC, THE PATIENT AND REPRESENTATIVE PANELS 42

5. EXPERT PANEL – APPROACH AND METHODOLOGY 57

6. EXPERT PANEL – CONCLUSIONS 67

7. EXPERT PANEL – RECOMMENDATIONS 70

APPENDIX 1: EXPERT PANEL EXERCISE 73

APPENDIX 2: EXPERT PANEL MEMBERSHIP 79

3

FOREWORD BY THE DIRECTOR GENERAL OF THE HEALTH SERVICE, MR TONY

O’BRIEN

Under the Health Act 1970 (as amended), eligibility for health services in Ireland is based primarily

on residency and means. In June 2014, the Government decided to examine options to develop a

policy framework to govern eligibility for health services. The HSE was requested to establish an

expert panel to examine the range of conditions that should be considered as a basis for eligibility of

a range of health services and seek to prioritise such conditions. This report represents the

culmination of the panel’s deliberations, informed by national and international evidence, expert

opinion and a public consultation process where the views of patients, patient representative groups

and professional bodies were sought.

I wish to thank Professor Frank Keane, Chair and Dr Alan Smith, Vice-Chair of the multidisciplinary

expert panel for producing this Report of the Expert Panel on Medical Need for Medical Card

Eligibility in a very short period of time. I would like to join with the Chair and Vice-Chair to add my

gratitude to all the stakeholders involved. I would especially like to thank the members of the public,

patient representative groups and patient advocacy groups for giving up their time and providing the

information needed to ensure that a comprehensive picture of Medical Card eligibility in Ireland was

captured.

The report makes a substantial contribution. It proposes improvements to the current system, calls

on us to strengthen the assessment and measurement of the burden of disease, and to develop our

governance structures by establishing a Strategic Clinical Advisory Group. Implementation of the

recommendations will increase confidence that we are optimising the use of resources in a fair and

equitable manner.

MR TONY O’BRIEN

4

FOREWORD BY THE CHAIR OF THE EXPERT PANEL, PROFESSOR FRANK KEANE

The Expert Panel was appointed by the Director General of the Health Service Executive, and it was

with some foreboding that I agreed to chair this eclectic but distinguished group (see Appendix 2).

Over the course of the summer months we had four fairly demanding meetings, interspersed with

substantial reading and study material. Despite the intervening holiday period, we believe we have

managed as a group to bring together and agree a document which sets out to address some of the

difficult and challenging issues around primary healthcare reimbursement and support in Ireland.

I am enormously grateful to all the members of the panel for their always helpful and constructive

inputs, their patience and their steadfast endeavour in seeing the job through. I am particularly

grateful to Dr Alan Smith, Vice-Chair, for the huge contribution he has made, not only to the

choreography of the meetings, but also the great time and commitment he has given to the

preparation of the document. He has been a pleasure to work with.

The second chapter written by Dr Deirdre Madden, Faculty of Law, University College Cork, ‘Ethical

Perspective’, deserves all our thanks for this contribution, which from the start moderated our

thought and judgement processes in a timely and reflective manner.

Our thanks also to Professor Anne Hickey and Mary-Ann O’Donovan and their team in the Division of

Population Health Sciences, Royal College of Surgeons in Ireland for the summary that they provided

from their analysis of the online submissions to the public consultation process. Thanks also to Dr

Marie Eagleton for her summary of the written submissions from patient representative groups.

Both of these are contained in Chapter 4, while the full documents will be published on the HSE

website. The Health Service Executive National Patient Advocacy Unit provided a summary of the

Patient Representative Forum held in Dublin in August, which is also contained in Chapter 4. We are

grateful for this. On behalf of the Expert Panel, I would like to thank the public and patient

representative groups alike for their very significant, caring and thoughtful inputs.

Finally, a document such as this could not have been compiled without the substantial support that

we have received from the Director General himself and from his office, particularly from Joan

Gallagher and Jim O’Sullivan. We were also greatly helped by John Hennessy, National Director of

Primary Care, and his team, including members of the Primary Care Reimbursement Service (PCRS),

Ivan McConkey and others. Last, but by no means least, I would like to acknowledge Helen Kelly not

only for her general helpfulness and valued opinions but also for her fastidious record and minute

keeping.

PROFESSOR FRANK KEANE

5

EXECUTIVE SUMMARY

The General Medical Service (GMS) scheme governs access to Medical Cards in Ireland. The

legislative basis for entitlement to Medical Cards is Section 45 of the Health Act 1970. Legislation

governing the award of Medical Cards does not mention the terms Medical Card or discretionary

Medical Card, but describes people who have full eligibility for health services. Current legislation

requires that an individual’s income and expenditure (i.e. their overall financial situation) must be

taken into account during the assessment process.

Controversy arose over the withdrawal and subsequent re-instatement of a number of ‘discretionary

Medical Cards’ during the course of 2012-14. Contributory factors included a long-established

political and public level of dissatisfaction with the Medical Card system, its perceived complexity

and operational inefficiencies; a general lack of understanding of the term ‘discretionary’ in the

context of Medical Cards; inconsistency in the assessment for Medical Card eligibility; the evolution

over the last 30-40 years of the Medical Card as a valuable asset to obtain and then retain; the

inflated value of the Medical Card arising from the automatic entitlements to a range of non-medical

benefits; and a lack of appreciation of predictable consequences arising from the 2011 centralisation

of the administration of the GMS scheme to the Primary Care Reimbursement Service (PCRS).

In July 2014 the Health Service Executive (HSE) commissioned three projects: (i) An Expert Panel to

firstly address the fundamental question, ‘Can medical conditions be listed in priority order as to

their suitability for Medical Cards?’, and secondly, to provide a contemporaneous overview of the

Medical Card system; (ii) a public and patient group consultation process; and (iii) a review by

Prospectus and Deloitte of the HSE Primary Care Reimbursement Service (PCRS) and its specific role

in the management of the Medical Card system. The outputs of the first two of these projects are

presented in this report prepared by the Expert Panel.

Media analysis of situations reported on during the Medical Card controversy during 2014 clearly

demonstrated a bias towards certain named conditions. Yet, there are many conditions that can be

very disabling and equally deserving – but do not have a ‘voice’ or ‘face’ in the consciousness of

elected representatives, the public or the media – such as very rare diseases, schizophrenia and

other mental health conditions. There are also situations when a patient has a disability or

impairment that does not necessarily have a specific name or diagnosis, such as the frailty associated

with simply growing old.

Many of the respondents to the public and patient consultation process indicated that the current

system for allocation of Medical Cards did not discern the true cost of chronic illness. Many patients

6

with chronic conditions, who do not have Medical Cards, pay up to the maximum for prescription

drugs every month (€144) and visit GPs more frequently than normal, which causes undue financial

hardship. In addition to paying the maximum for prescribed medication, some patients may often

have to pay for other therapies.

There is a desire from the public to see Medical Card eligibility based on the existence of a condition

which gives rise to a specified level of medical need and an assessment of how that condition

impacts their lives, rather than an automatic right to a Medical Card on the basis of having a

particular condition. The public also recognises that having a Medical Card is a gateway to other non-

medical services and that some individuals fear loss of their Medical Card because access to these

other benefits may then be lost. The public have expressed the view that the issuance of Medical

Cards should be for medical benefit and should be decoupled from other non-medical benefits.

There appears to be an inconsistent interpretation and understanding of the requirement to have a

Medical Card to access community primary care services such as physiotherapy, occupational

therapy, speech and language therapy, public health nursing etc. The use of a Medical Card as the

qualifying criterion or allocation mechanism for access to aids and appliances inevitably means that

there is inaccessibility for non-Medical Card holders who have potentially greater clinical need.

The request for and scrutiny of personal financial data can be an upsetting exercise for individuals

being assessed and reviewed for Medical Cards, but it nonetheless remains the only mechanism

available to the health service to fairly and equitably assess undue hardship. Furthermore, a review

of the approach taken in other European countries has confirmed that there is no ideal system for

assessing the medical burden of disease other than by financial means, with variations including the

capping of out-of-pocket expenses, co-payments or some form of universal health coverage.

The advantage of a means test approach is that it is objective and avoids the many difficulties

inherent with the subjectivity of making expert judgements of the impact of a disease on the patient

and their family. The means test approach can also accommodate and respond to the clinical reality

that the severity and impact of a particular condition may change over an unpredictable period of

time.

Although imperfect, the current granting of Medical Cards on a discretionary basis does work to a

certain level, and cards are awarded on this basis whenever it is possible to do so. The Comptroller

and Auditor General’s Report on the accounts of the public services 2012 (published September

2013) reported that in the majority of cases, the cards were awarded on the basis of significant

expenditure in relation to medical costs.

7

The eligibility criteria for a Medical Card, as well as other Primary Care Schemes and their application

processes, have evolved over time in a fragmented manner, and have become complex and poorly

understood by patients, medical staff and administrators alike. It is inevitable that this has

contributed to confusion reflected in the public irritation that has particularly resulted from the 2011

centralisation and standardisation of the PCRS Medical Card renewal, and the current review and

appeals processes. This frustration is further evidenced by the sheer volume of phone calls, enquiries

and Parliamentary Questions received by the PCRS on a daily basis – a workload that diverts scarce

resources away from the processing of Medical Card applications, and which is simply unsustainable

and inefficient.

Centralisation of the Medical Card application process into the PCRS has reduced what was an

unacceptable level of operational variability and will continue to accrue benefits, provided that

satisfactory communication systems are set up with Local Health Offices, GP practices, the public

and elected representatives. The PCRS finds itself in the difficult if not invidious position of

responding to calls for the provision of a more compassionate service while at the same time being

pressed by the Comptroller and Auditor General to incorporate more scrupulous auditing and review

processes on behalf of the taxpayer. A careful balance is required between guarding against

inefficient State spending with the loss of an individual’s rightful entitlement.

There is clearly a societal desire to exercise more compassion and to recognise and support those

coping with specific difficult circumstances arising as a result of financial and/or medical hardship,

which should be accommodated through a more explicit discretionary process.

To address this desire the Expert Panel recommends that:

1. In the absence of international objective and reproducible methods of measuring burden of

disease and illness, it is neither feasible nor desirable to list conditions in priority order for

Medical Card eligibility. A listing approach risks inequity by diagnosis and a further

fragmentation of services.

2. In the context of an ethical approach to the allocation of finite resources, the current system

as it stands is not without its merits for the great majority.

3. The operational deficiencies which currently exist are addressed using an ethical principles

framework approach. There are opportunities for significant improvements in the current

system using this approach to (a) ensure that any priority setting process is more transparent;

(b) involves all stakeholders; (c) delivers similar outcomes for those in broadly similar

circumstances; (d) takes account of health outcomes in the context of a finite health budget,

8

and (e) is sufficiently flexible and attentive to the most vulnerable individuals and those with

critical needs.

4. The calculation of financial hardship or means testing should be the primary responsibility of a

Government Department or body other than the health service.

5. The role of the health service would appear to be more appropriately qualified to use third-

party provided means-tested information, and to define and then identify ‘medical hardship’

or ‘burden of disease’.

6. The governance structure of the PCRS should be published. It should detail responsibility and

accountability structures for the administration of the Medical Card Scheme.

7. The separation of the PCRS Medical Card Scheme from the PCRS re-imbursement [of Primary

Care Contractors] function should be considered.

8. Financial hardship or means testing should remain the main discriminator for selecting the

large majority of those eligible for a Medical Card, which is consistent with other health

systems in the European Union.

9. Where possible, the Medical Card system should be made simpler and more explicit, and there

needs to be a comprehensive suite of communication and education materials to assist

individuals and healthcare professionals with the Medical Card application process and the

concept of renewal.

10. Non-medical benefits should be uncoupled from Medical Cards. Access to these non-medical

benefits should, however, remain as a means-tested support, but should not be an automatic

entitlement determined by an individual’s Medical Card status.

11. Access to primary care services (physiotherapy, occupational therapy, speech and language

therapy, public health nursing etc.) should be consistent across the country. Prioritisation

should be on the basis of clinical need – independent of the possession of a Medical Card –

defined after triage into categories of urgent or routine, and thereafter seen in chronological

order within these categories.

12. An individual’s Medical Card status should not be the sole qualifying criterion for access to aids

and appliances.

13. For individuals awarded a Medical Card incorporating ‘discretion’, the renewal process needs

to be handled with a greater degree of sensitivity.

9

14. As a working principle, discretionary Medical Cards should only be provided to the individual

with the index condition, and not to the entire family.

15. If a discretionary Medical Card award involves any terminal or life-limiting condition, such as

motor neurone disease, then it should be granted for the remainder of life, and should not

require the individual or their family to undergo a standard review process every three years.

16. Society’s desire to exercise a more compassionate and supportive approach for those with a

combination of financial and/or medical hardship should be addressed by extending the

discretionary decision-making process beyond financial hardship to include an assessment of

the burden of a medical condition(s).

17. The general population should be involved in deliberating on the ethical and social issues

arising from access to healthcare in the context of finite resources.

18. A new Strategic Clinical Advisory Group should be incorporated into the PCRS governance

structure, with broad and experienced clinical, lay and administrative representation and

access to expert opinions when required. It is the view of the Expert Panel that this is required

in order to give clinical oversight and guidance to the operation of a more compassionate and

trusted Medical Card system which can strive to ensure that the relatively small percentage of

cases requiring the recognition of the burden of a medical condition(s), over and above

financial hardship, can be accommodated.

19. The initial work programme for the Strategic Clinical Advisory Group should firstly address the

development of a strategic framework for assessment and measurement of the burden of

disease; secondly, the development of appropriate operational guidelines for Medical

Assessors and Decision Officers and, thirdly, the development of appropriate key performance

indicators (KPIs) to support clinical oversight and performance assurance.

20. The significant challenges to be faced in extending the discretionary decision to include an

assessment of the burden of a medical condition(s) must be acknowledged by all. These

include the fact that professional judgement in the assessment of medical hardship can never

be completely objective, fully transparent and totally reproducible; the methodology to

underpin an enhanced discretionary process requires an options appraisal of existing

measurement and disability comparators, and proxy measures of the burden of disease

including healthcare consumption; a realistic timeframe to examine the feasibility and costing

of such a process; and finally, the additional resourcing that will be required to increase clinical

10

assessment capacity, including doctors, nurses and allied health professionals, in order to

provide a greater degree of scrutiny and personalised clinical judgement.

21. In terms of maximising population health gain, a priority for the health service should be to

use the preceding recommendations as a stepping stone to the implementation of the first

phase of the Government’s Primary Care reform programme, providing free GP care for all,

with the aim of further ensuring universal access to the full spectrum of Primary Care Services

as a matter of course and thereby aligning the health service in Ireland with health systems in

other EU Member States.

22. An annual report of the implementation status of each of the recommendations contained in

this report should be presented by the HSE National Director of Primary Care to the Director

General of the HSE.

11

1. INTRODUCTION

1.1 Ideally, a national health service should be free at the point of use, meet the clinical needs of

everyone, be comprehensive and integrated in the services it delivers, and provide support,

education and care that is evidence based and outcome validated. This is a tall order for any

national government and is probably not fully achievable.

1.2 The General Medical Service (GMS) scheme governs access to Medical Cards in Ireland.

Eligibility criteria are set out in legislation and have traditionally been based on income

thresholds since the 19th

century, when Poor Law bodies took over the dispensary system and

provided free services for those who were unable to pay for them. Although there have been

various amendments and reforms of the system since that time, the basic premise has

remained the same i.e. that the State has an obligation to provide general medical services for

those who are unable to pay for them through their own means. In addition to setting specific

income thresholds for specified categories of persons who are eligible to receive listed

services, there has also traditionally always been a discretion vested in the Local Health

Offices/Health Boards to grant Medical Cards in cases of particular hardship to those who

would otherwise be ineligible.

1.3 Up to July 2011, the issuance of Medical Cards was administered in approximately 100 Local

Health Offices, reflecting the former health board structure. A key risk in any such

decentralised administration system is unaccountable inconsistency or variability between

regions in the application of eligibility rules. While the Medical Card Scheme had been the

basis for the delivery of the majority of primary care services in Ireland for over 40 years, there

was clear evidence that assessment for eligibility for Medical Cards was not consistent

between the 100 Local Health Offices conducting the reviews, with some card holders granted

Medical Cards for long periods, in some cases up to 20 years.

1.4 In consultation with the Department of Health, the HSE decided that fundamental change in

the administration of the scheme was required if the inefficiency and lack of transparency and

consistency was to be addressed. Since 1 July 2011, card issuance has been managed centrally

within the HSE Primary Care Reimbursement Service (PCRS). The objective of the centralisation

process was to provide for a single, uniform system for Medical Card applications and

renewals, replacing the different systems previously operated in the Local Health Offices;

streamline work processes and implement process improvements, resulting in more efficient

12

processing; reduce the number of staff required to process applications and renewals;

improve customer services and over time; ensure a more accountable and better managed

Medical Card processing service.

1.5 There is evidence that the wide variation in assessment for Medical Card eligibility has

reduced, and that an appropriate level of transparency, consistency and equity is appearing.

See Figure 1.

Figure 1 Variation in assessment of Medical Card eligibility before and after administrative

centralisation

1.6 Although the centralisation of administration of Medical Card eligibility assessment has

allowed the introduction of a uniform system for assessment of eligibility, it was somewhat

inevitable that such a large system, and indeed cultural change over a relatively short time

period, would result in a certain level of non-renewal amongst Medical Card holders. The issue

of Medical Cards has come to the fore this year, triggered in part, it appears, by the level of

non-renewal amongst Medical Card holders, and in particular the non-renewal of Medical

Cards that had been issued on the basis of discretion. This has caused significant upset and

disquiet.

13

1.7 In the context of discretionary Medical Cards, the upset and disquiet has been exacerbated by

an inherent level of massive variability in their award across the 26 counties, ranging from 3-

12/100,000 population to 39-53/100,000 population.1

1.8 In its report to the Committee of Public Accounts in June 20142 the HSE explained that planned

expenditure (2014) in the delivery of primary care services across 12 community health

schemes, including the Medical Card Scheme, to the entire population would amount to

approximately €2.4 billion, involving approximately 80 million transactions delivered to more

than 3.4 million eligible persons.

1.9 The scale of costs within the Medical Card and Primary Care schemes, as well as the volume of

associated transactions, mean that there are areas of risk that need to be managed and

controlled. The Comptroller and Auditor General has already reported that the evidence

suggests there is a significant level of excess payment in the Medical Card system and the HSE

should conduct reviews of random samples of Medical Card holders on an annual basis.3 In the

main, excess payment (i.e. ineligibility) arises as a result of changes in the card holder’s

circumstances over the validity period of the card.

1.10 Legislation enacted in March 2013 provides for the furnishing of data by the Department of

Social Protection and the Revenue Commissioners to the HSE.

1.11 The HSE has implemented a series of control options which comprise a review upon expiration

of the defined eligibility period; risk-based reviews based on specific criteria such as inactive

cards or where information from other Departments4 or bodies indicate that the Medical Card

should be reviewed; random review; use of the Death Events Notification System (DEPS),

which identifies people who are deceased.

1.12 In response to the public disquiet as to the legitimacy and authority of the Medical Card

system, a Government decision was taken (July 2014) to restore discretionary Medical Cards to

approximately 13,300 people. In addition, the Director General of the HSE commissioned an

Expert Panel to attempt to list conditions in priority order as to their eligibility for Medical

Cards; he also commissioned a Review of the HSE PCRS by Prospectus and Deloitte.

1 Personal communication, July 2014. HSE, Office of National Director of Primary Care

2 HSE Report to the Committee of Public Accounts on 12 June 2014

3 The Comptroller and Auditor General’s Report on the accounts of the public services 2012 (published

September 2013) 4 Section 8 Health (Alteration of criteria for eligibility) Act 2013. Legislation enacted in March 2013 provides for

the furnishing of data by the Department of Social Protection and the Revenue Commissioners to the HSE.

14

1.13 It should be noted that the Government announced in 2013 (Budget Day) that all children

under the age of six years would be entitled to GP Visit Cards.

1.14 The Terms of Reference of the Expert Panel were:

1.14.1 To advise on the appropriate approach to identify and examine medical conditions,

the treatment and management of which would benefit most from access to services

currently only available to persons with full Medical Card eligibility.

1.14.2 To devise a framework, incorporating specific criteria which will prioritise medical

conditions in terms of the degree of health benefit to the person with the medical

condition.

1.14.3 To apply objective medical and scientific evidence during the course of all

deliberations, conclusions and recommendations.

1.14.4 To seek advice of other relevant experts as required.

1.14.5 To take into consideration the views of patients, the public and patient

representative/advocacy groups, in order to reflect the patient perspective.

1.14.6 Advise on the timeframe for any periodic review of the list of medical conditions

proposed.

1.14.7 Advise on the appropriate approach to meet the needs of individual patients with

medical conditions of a transient nature.

1.14.8 Provide an initial report to the Director General (DG) to include a list of medical

conditions for the DG to present to the Minister for Health and Government.

1.14.9 Report to the Budget Impact Analysis Group and to the Director General.

1.15 The Expert Panel, although primarily charged with attempting to list medical conditions as to

their suitability for Medical Card, were of the view that this would inevitably result in providing

their perspective and commentary on the operation of the Medical Card system. Because of

the sheer complexity of the issues involved, the panel believed that an ethical commentary

and perspective would provide an important and valuable framework to guide their

deliberations, conclusions and recommendations. The Expert Panel’s work has also been

guided and referenced against the experience in other EU healthcare systems. The Expert

Panel was particularly determined to ensure that the views of patients, the public and patient

representative/advocacy groups would play a central role in their work.

15

Medical Cards and media coverage (January-June 2014)

1.16 The Expert Panel examined media coverage of the discretionary Medical Card issue as it

evolved over the course of the first six months of 2014.5

1.17 Between 1 January and 30 June 2014, a total of 772 articles in the Republic of Ireland press

were recorded on the issue of discretionary Medical Cards; the heaviest volumes of articles

were recorded in May and June, with 330 and 333 articles respectively (See Figure 2). One-

third of all reportage on the matter (equating to 254 articles) referenced a particular illness or

condition. May was the heaviest month for references to illnesses or conditions that could be

impacted by the loss of discretionary Medical Cards, with 129 articles noted.

Figure 2 Trend in media coverage of medical cards (Jan-June 2014)

5 Kantar Media was commissioned to undertake an analysis of media coverage on behalf of the Expert Panel,

covering the period January-June 2014.

16

1.18 Down syndrome was by far the most prevailing condition to resonate in the press over the

timeframe. References to cancer-related illnesses also substantially permeated the press

coverage. See Table 1.

Table 1 Illness and conditions associated with media coverage (January-June 2014)

Reported illness/condition Volume of

articles

Down syndrome 106

Cancer 81

Arthritis 29

Leukaemia 29

Cerebral palsy 26

Motor neurone disease 20

Kidneys/dialysis 19

Multiple sclerosis 12

Epilepsy 9

Mowat-Wilson syndrome 9

Asthma 8

Wiedemann-Steiner syndrome 4

KCNQ 3

Narcolepsy 3

Lung transplants 2

Severe global development delay 1

STXBP1 1

Immunodeficiency conditions 1

Parkinson’s disease 1

Spina bifida 1

Filamin-A gene disorder 1

17

1.19 Multiple charities and associations obtained citations in the press in relation to this issue, with

the most prolific being Our Children’s Health, the Jack & Jill Children’s Foundation, Irish Cancer

Society and Down Syndrome Ireland (Figure 3).

Figure 3 Charities and associations citations in media coverage (January-June 2014)

18

2. ETHICAL PERSPECTIVE

Relevance of ethics

2.1 Where resources are limited and it is impossible or impracticable to provide universal services,

any decision to reallocate resources within the public health system, or to allocate services to

one group rather than another, is a decision that must be open to strict scrutiny and

accountability. The basic premise of Irish society is that every citizen has fundamental

constitutional rights such as the right to life and the right to education, but enforceability of

those rights may be contingent on the availability of the necessary resources. When resources

are limited, corresponding rights to those resources also become limited. The difficulty lies in

trying to ensure fairness and ethical justice in the rationing process. Many criteria play a role in

decision-making in this context. As follows:

• The societal wish to maximise general population health

• Distribution of health in the population and redressing inequities; many societies may

wish to prioritise vulnerable population groups, such as those in lower socio-economic

groups, those with chronic conditions, children, pregnant women and the elderly.

• Specific societal preferences that target preventative over curative treatments, or the

provision of acute care in life-threatening situations

• Budgetary constraints and the costs of implementation

• Political criteria such as the influence of interest groups and legacy issues.

2.2 In making such difficult decisions, ethical principles can come into conflict and it becomes

necessary to balance competing concerns. There is no national or international consensus on

the correct approach to this balancing exercise.6 The emphasis in the literature on this issue is

on ensuring that the decision-making process itself is fair, open and inclusive of all

perspectives. Therefore it is important that the decision-maker is as transparent as possible in

relation to the ethical stance taken and the values underpinning the decision.

6 The ethical principles adopted by Healthy Ireland in its Framework for Improved Health and Wellbeing 2013-

2025 are Equity, Fairness, Proportionality, Openness and Accountability, Solidarity, and Sustainability,

http://www.hse.ie/eng/services/publications/corporate/hieng.pdf

19

Principalism

2.3 There are a number of ethical approaches that may be taken to the analysis of healthcare

decision-making. These include casuistry (solving cases by referring to paradigmatic cases for

which an undisputed solution has already been found), coherence analysis (reflecting on the

consistency of ethical arguments or theories without prescribing which arguments are prima

facie relevant), interactive (inter-subjective consensus on problematic issues reached through

discourse involving relevant stakeholders), or principalism (analytical framework based on

common moral principles shared in society). The latter has recognised advantages in that it

provides a comprehensive normative framework for ethical analysis rather than just a

procedural approach. The application of biomedical principles, in particular those developed

by Beauchamp and Childress,7 is one of the most frequently used approaches to resolving

ethical dilemmas in healthcare.

The Four Principles approach devised by Beauchamp and Childress are as follows:

• Respect for persons (autonomy, ensuring patient understanding, voluntariness, decision-

making capacity)

• Beneficence (balancing benefits and harm: risks/costs)

• Non-maleficence (the minimisation of harm to others)

• Justice (the fair distribution of benefits and burdens).

2.4 Although it does not feature in the Four Principles approach outlined above, another

important ethical value is that of compassion, which demands that attention be paid to the

effects of health inequalities on individuals and families. Inequalities in health are differences

in health status or in the distribution of health determinants between different population

groups due to the conditions in which people are born, grow, live, work and age. As pointed

out by Healthy Ireland, “there is an uneven distribution of the risk factors associated with

many chronic diseases, with the burden borne disproportionately by those in the lower socio-

economic groups. People with higher socio-economic position in society have a greater array

of life chances, more opportunities to lead a more fulfilling life and tend to have better

health.”8

7 Beauchamp and Childress, Principles of Biomedical Ethics (1979), now in its 7

th ed.

8 Healthy Ireland, A Framework for Improved Health and Wellbeing 2013-2025 at page 45

http://www.hse.ie/eng/services/publications/corporate/hieng.pdf

20

2.5 These ethical principles are prima facie binding, meaning that they are always important in

every situation, but they are not absolute and may come into conflict with each other. The

principles must always be viewed in the context of the specific matter under consideration,

and balanced with each other. Balancing principles can be challenging, but it is worth

considering that a principle should only be overridden if better reasons can be provided for

acting on an overriding principle, and the infringement must be commensurate with achieving

the primary goal, negative effects of the infringement are minimised, and the decision is

reached impartially.

2.5.1 Respect for persons – This includes acknowledging a person’s right to make choices, to

hold views, and to take actions based on personal values and beliefs. It is often

described as respect for autonomy, which literally means self-rule, in other words

making one’s own deliberate decisions. In the medical context, respect for autonomy

is of vital significance in ensuring that patients are informed about their choices and

asked to make their own decisions about their healthcare. It requires doctors to seek

informed consent from patients before any treatment or intervention (except in cases

of incapacity or medical emergency). It also requires patient confidentiality to be

maintained, appropriate behaviour to be practised and good communication methods

to be used between patients and healthcare professionals.

2.5.2 Beneficence and non-maleficence – The ultimate aim in healthcare is to produce net

benefit over harm, while recognising that inevitably some risk of harm may exist when

any medical intervention takes place. Beneficence is the traditional Hippocratic duty to

prioritise patients’ best interests, while non-maleficence is the duty not to cause harm

or risk of harm to patients. These duties mean, for example, that those who treat

patients must be appropriately qualified, as otherwise the risk of causing harm

becomes disproportionate. Healthcare professions therefore undertake to provide

appropriate training and education to prospective and current practitioners in order to

ensure adequate protection of patients.

2.5.3 Justice – The principle of justice could be described as the moral obligation to act on

the basis of fair adjudication between competing claims. As such, it is linked to

fairness, entitlement and equality. In healthcare ethics, this can be subdivided into

three categories: fair distribution of scarce resources (distributive justice), respect for

people’s rights (rights-based justice) and respect for morally acceptable laws (legal

21

justice).9 In the context of the allocation of resources, conflicts exist between several

common moral concerns: to provide sufficient healthcare to meet the needs of all who

need it; when this is impossible, to distribute healthcare resources in proportion to the

extent of people's needs for healthcare; to allow healthcare workers to give priority to

the needs of their patients; to provide equal access to healthcare; to allow people as

much choice as possible in selecting their healthcare; to maximise the benefits

produced by the available resources; to respect the autonomy of the people who

provide those resources and thus limit the cost to taxpayers and subscribers to health

insurance schemes. All these criteria for justly allocating healthcare resources can be

morally justified but not all can be fully met simultaneously.10

Justice in access to healthcare services

2.6 Clearly, good health is vitally important. We all desire it for ourselves, our loved ones, and

indeed for everyone. Few would dispute that access to essential healthcare should not hinge

on one’s ability to pay. However, “at its most basic level, it is literally impossible for

government to guarantee good health to its citizens.”11

…“Because of resource scarcity, access

to healthcare and related technologies in practice hinges not on legal requirements, but on

government budget decisions and, at the private level, on clinical judgements of health

professionals and the incomes of individual patients. In keeping with their responsibility to

provide for the general welfare, governments have much of the responsibility for defining

public health objectives for the whole society and providing the resources to achieve them.

Those determinations always involve negotiation, trade-offs, and the balancing of interests.”12

2.7 In relation to the issue of access to or allocation of healthcare services, the principle of justice

is one of the most important bioethical principles in this balancing of interests and has been

addressed in bioethics literature since the 1980s. If we accept that the health system must be

sustainable13

and that it is impossible for any health system to provide everything for

everyone, then setting limits on expenditure of shared societal resources is ethically required

and must be done in a just, transparent and compassionate way.

9 R Gillon “Medical ethics: four principles plus attention to scope” (1994) BMJ 309:184 10 Gillon, note 4 11

Timothy Goodman “Is there a right to health?” (2005) Journal of Medicine and Philosophy 30:643-662 12

Goodman note 6 at 655 13

Healthy Ireland, a Framework for Improved Health and Wellbeing 2013-2025, Appendix 2

http://www.hse.ie/eng/services/publications/corporate/hieng.pdf

22

2.8 Rationing14

is the controlled allocation of some scarce resource or goods. It implies that limits

are placed on its availability. In healthcare this applies to treatments, services,

pharmaceuticals, medical procedures and so on. When healthcare resources are rationed,

patients may be restricted to certain treatments or placed on waiting lists for treatments. It

means that someone somewhere has made a decision about the limits of what is provided or

how it is provided, i.e. a priority-setting decision.15

Although rationing of healthcare resources

sounds like an unethical proposition, as it interferes with individual choices and values, it is

inevitable in all healthcare systems around the world. Indeed, there are those who argue that

healthcare rationing is not only necessary but also desirable. “The careful rationing of health

care is one of the factors that make a health care system work well. The best health care

systems in the world do it.”16

2.9 Hard ethical choices are sometimes masked in clinical or technical terms, as the idea of

rationing is unpalatable, unpopular and not politically correct, since it means in reality that

some people who may benefit from healthcare may have to do without it. However, it is

important to acknowledge that rationing is not limited to State-run or sponsored public health

systems, it also takes place in private health insurance and in the most affluent of societies.

When the Government decides which drugs to subsidise, it is engaged in rationing; when it

decides where to build a new hospital, it is engaged in rationing; when it introduces a cancer

screening programme it is engaged in rationing because as a result of those priority-setting

decisions, other drugs, citizens and patients will not be funded. Private insurers carry out the

same exercises by loading premiums on new entrants with pre-existing conditions, or by

agreeing to only fund certain treatments. It is inevitable that some patients will be

disadvantaged by the limits that are set in either the public or the private healthcare system.

What is crucially important here is that the priority-setting decisions must be reached fairly

and efficiently, so that they can be morally justified.

2.10 As members of society we are still feeling our way even at the level of defining what the

competing moral concerns of justice are. Gillon says we must be particularly wary of

apparently simple solutions to what have been perceived as highly complex problems for at

least 2,500 years.17

For example, he refers to populist solutions in distributive justice such as

have occurred in Oregon in the United States (see below), and technical and simplistic

14

Indeed, the word rationing itself is usually avoided, as it raises memories of war-time scarcity and poverty,

but it is arguably a more honest and accurate description of the reality of healthcare systems worldwide. 15

Bognar and Hirose, The ethics of health care rationing (Routledge Press 2014) page 1 16

Bognar and Hirose note 9 at 2 17

Gillon, note 4

23

economic solutions such as the system of costed quality-adjusted life years (QALYs) which are

tempting in their definitiveness and simplicity; they fail, however, to give value to the wide

range of other potentially relevant moral concerns.

How do we set priorities ethically?

2.11 Disease and disability, by impairing normal functioning, restrict the range of opportunities

open to individuals. Healthcare is special because it protects or tries to restore normal

functioning, which in turn protects the range of opportunities open to individuals. Healthcare

thus makes a distinct but limited contribution to the protection of equality of opportunity; it

preserves for people the ability to participate in the political, social and economic life of their

society and sustains them as fully participating citizens.18

However, although the idea of

rationing health services causes political and social discomfort, the reality is that the notion

that a State could provide every single intervention that holds even the smallest possibility of

clinical benefit to every citizen is financially untenable.19

The argument that healthcare should

contribute to equality of opportunity does not provide us with the means by which to address

highly contested issues of how to distribute medical goods and services fairly.

2.12 There are various approaches in moral theory that one might take to this issue: libertarianism,

utilitarianism, egalitarianism etc. Nearly all appear to take the view that just societies should

provide all their members with guaranteed access to at least a decent minimum of healthcare,

although there is little consensus on what the decent minimum entails.20

Acknowledging

therefore that some rationing/priority-setting/allocation decisions must be made, a fair

process must be established by which to make such decisions.

The Oregon example

2.13 An often-quoted process of healthcare allocation decision-making is the Oregon plan, which

took place in the late 1980s following a public outcry after the death of a seven-year-old boy

whose bone marrow transplant, which would have cost €100,000, was not covered by

Medicaid. The State of Oregon realised that it had to balance costs, benefits and access in the

face of scarcity of resources. Either it had to limit the Medicaid programme to the most cost-

effective services, or it had to deny healthcare to many people. The State Government

18 Norman Daniels, “Justice, Health and Healthcare” (2001) American Journal of Bioethics Vol. 1 No. 2 19

Samia Hurst and Marion Danis “A framework for rationing by clinical judgement” Kennedy Institute of Ethics

Journal (2007) Vol 17, No.3, 247-266 20

Madison Powers and Ruth Faden, “Inequalities in Health, Inequalities in Health Care: Four Generations of

Discussion about Justice and Cost-Effectiveness Analysis” (2000) Kennedy Institute of Ethics Journal Vol. 10,

No.2, 109-127 at 111

24

decided to develop an open and transparent process for citizens to agree on a list of medical

services that would be covered by its Medicaid programme for those below a specified income

level. A working group was established and agreed on three important principles:

• Access to a basic level of care must be universal.

• Society is responsible for financing care for poor people.

• A basic level of care must be defined through a public process.

2.14 A panel of experts known as the Health Services Commission was tasked with formulating a

list following extensive public consultation which was declared to be the world’s first

prioritised list of health services.21

The first list, which was based on a methodology of cost-

benefit analysis, yielded some peculiarities, such as possibly covering tooth caps, but not

surgery for emergent appendicitis. The plan was subject to much criticism, due to these

anomalies and there was also opposition to the plan on the grounds that it discriminated

against people with disabilities. The Commission revised the plan to take these considerations

into account, with the result that cost effectiveness was relegated to the back seat.22

2.15 As an example of the commission’s work in rebalancing competing claims, the highest-priority

categories 1 through 6 subsequently encompassed services such as the “birth of a child and

maternal care” (Category 1); “preventive care;” and “life-threatening diseases,” each with

many line items in the category, whereas lower-ranked categories included non-fatal, self-

limiting, elective, or inconsequential conditions and interventions. The Oregon Health Plan

was finally accepted in 1993. Although in many ways an imperfect method, many advocates

have noted the importance of the list from an ethical point of view in attempting to develop a

fair and transparent consultative public process for prioritising medical services through its

laws and regulations.

The National Health Service (UK)

2.16 Another example of how rationing decisions are made in other jurisdictions can be seen in the

model adopted in the UK where healthcare is provided by the publicly funded National Health

Service (NHS). In England and Wales, decisions relating to access to healthcare are

decentralised and services are organised by regional trusts, with the result that there are

inequalities between different areas, known as the postcode lottery.23

Trusts make their own

21

http://www.oregon.gov/oha/healthplan/pages/priorlist.aspx 22

Bognar and Hirose, note 10 at 61 23

Bognar and Hirose, note 10, 63-65

25

decisions about spending and coverage, so a patient may not be covered for an intervention

that another patient living in a different area would be covered for.

2.17 To reduce this inequity, the government asked the National Institute for Clinical Excellence

(NICE) to draw up guidelines for coverage and spending decisions. Its guidelines are based on

cost effectiveness analysis, measured by QALYs,24

of new medical technologies and treatments

and it has not undertaken a systematic review of all medical technologies and services. NICE

also instituted Citizen Councils, comprised of representatives of the general population rather

than experts in healthcare, to deliberate on the ethical and social issues raised by its

guidelines. In common with the Oregon Health Plan, this also demonstrates the importance

and value of a fair and transparent consultative public process for prioritising payment for

medical services.

Conclusion

2.18 Every member of society must have an adequate array of core healthcare benefits; every

member of society deserves an adequate level of protection from illness and avoidable pain

and suffering related to health conditions. However, this does not mean access to every

potentially useful health service, as there are links between access, cost and quality that

cannot be ignored. These interconnections must be comprehensively considered, as otherwise

they may result in ethical difficulties in terms of reduced overall access, or unacceptable

effects on cost and quality.

2.19 The contents and limits must be established through an ethical process – setting limits or

‘rationing’ is difficult, but can be achieved ethically if the following five principles are taken

into account:25

1. Transparency – the priority-setting process should be transparent to those affected.

2. Participatory – the process should involve all stakeholders in the design of the process.

3. Equity and consistency – it should result in similar decisions for those in similar

circumstances.

4. Sensitivity to value – it should take into account net health outcomes of services and the

required resources.

5. Compassion – it should be flexible, responsive to individual values and attentive to the

most vulnerable individuals and those with critical needs.

24

Quality-adjusted life years 25

Ethical Force program of the American Medical Association: http://www.ama-assn.org/ama/pub/physician-

resources/medical-ethics/the-ethical-force-program/fair-health-care-coverage.page

26

3. THE CURRENT MEDICAL CARD SYSTEM IN IRELAND

Legislation

3.1 The main legislation on entitlement to Medical Cards is Section 45 of the Health Act 1970. This

has been amended a number of times.

Section 45, as amended, provides:

(1) A person in either of the following categories shall have full eligibility for the services

under this Part—

(a) adult persons, who in the opinion of the Health Service Executive, are unable

without undue hardship to arrange general practitioner medical and surgical

services for themselves and their dependants,

(b) dependants of the persons referred to in paragraph (a).

(2) In deciding whether or not a person comes within the category mentioned in subsection

(1) (a), the Health Service Executive shall have regard to the person’s overall financial

situation (including the means of the spouse, if any, of that person in addition to the

person’s own means) in view of the person’s reasonable expenditure in relation to

himself or herself and his or her dependants, if any.

3.2 Of note, the legislation governing the awarding of Medical Cards does not mention the phrase

Medical Cards. Instead, it describes people who have full eligibility for health services.

3.3 The health service can exercise discretion when a person does not qualify for a Medical Card

under Section 45 (1), but where circumstances would merit the awarding of a card.

Section 45, as amended, provides:

(7) Any person who is not in either of the categories mentioned in subsection (1) but who, in

relation to a particular service which is available to persons with full eligibility, is

considered by the chief executive officer of the appropriate health board to be unable,

without undue hardship, to provide that service for himself or his dependants shall, in

relation to that service, be deemed to be a person with full eligibility.

3.4 The only criterion used to determine whether or not to provide a Medical Card is based is

whether the individual would be unable to provide that service for himself and his dependants

without undue hardship. The Act does not provide for further criteria upon which the health

service can evaluate what amounts to undue hardship.

27

3.5 The exercise of discretion provided for in Section 45 (7) can only be determined using

professional judgement and expertise. Each case must be determined on its merits, using the

criteria that are appropriate in each case to decide on the issue of undue hardship.

3.6 Any setting of an exhaustive list of criteria or measuring of thresholds might amount to an

unlawful restriction of the health service’s statutory discretion. As a result, flexibility is

required in order to properly assess each case on its merits and evaluate the injustice to the

individual against the tangible public benefit if a card is to be withheld.

3.7 Entitlement to a GP Visit Card is governed by Section 58 of the Health Act 1970 (as amended

by the Health (Amendment) Act 2005).

Section 58 of the Health Act, 1970, as amended, provides:

(1) The Health Service Executive shall make available without charge a general practitioner

medical and surgical service for a person in any of the following categories –

(a) persons with full eligibility

(b) adult persons with limited eligibility for whom, in the opinion of the Health Service

Executive, and notwithstanding that they do not come within the category mentioned in

section 45(1)(a), it would be unduly burdensome to arrange general practitioner medical

and surgical services for themselves and their dependants, and

(c) dependants who are ordinarily resident in the State of the persons referred to in

paragraph (b).

(2) In deciding whether or not a person comes within the category mentioned in subsection (1)

(b), the Health Service Executive shall have regard to the person’s overall financial situation

(including the means of the spouse26

, if any, of that person in addition to the person’s own

means) in view of the person’s reasonable expenditure in relation to himself or herself and his

or her dependants, if any.

26 The Revenue Commissioners are of the view [related to Data Protection] that it cannot, under the current

legislative arrangements, supply Revenue information to the HSE in relation to spouses.

28

Medical Card application process

3.8 An individual may be entitled to a Medical Card if they are ordinarily resident in Ireland.

Entitlement is decided by the Health Service Executive (HSE) and is mainly based on legislation

as described above.

3.9 If an individual does not qualify for a Medical Card, then they may qualify for a GP Visit Card.

This is also based on legislation, as described above.

3.10 The majority of Medical Cards are awarded on the basis of a means test together with an

examination of an individual’s medical and social circumstances. Every new application can go

through four steps to determine their eligibility for a Medical Card or GP Visit Card.

3.10.1 Step 1: If an individual’s assessed income is less than the income guideline ceiling,

then they qualify for a Medical Card.

3.10.2 Step 2: If an individual’s income is above the relevant guideline, then their medical and

social circumstances can be taken into account to establish whether undue hardship

would occur if they did not get a card.

3.10.3 Step 3: If an individual does not qualify for a Medical Card, they are then automatically

assessed for a GP Visit Card. The income guideline ceilings are approximately 50%

higher than those for a ‘regular’ Medical Card. If an individual’s assessed income is less

than the guideline, then they qualify for a GP Visit Card.

3.10.4 Step 4: If an individual’s income is above the guidelines for a GP Visit Card, then again

the medical and social circumstances are taken into account to see if it would be

unduly burdensome for that individual to have to meet the GP costs themselves.

3.11 Current legislation requires that both an individual’s income and expenditure (i.e. their overall

financial situation) must be taken into account during the assessment process. ‘Undue

hardship’ and ‘unduly burdensome’ do not appear to have significantly different meanings in

the assessment process. For people aged over 70, applications are assessed on gross income

at higher thresholds and expenditure is not taken into account. However, these individuals

have the option of applying under the general Medical Card scheme, where the thresholds set

are lower, and expenditure is taken into account in this process.

29

3.11.1 The assessment process27

examines the individual’s ability to meet the essential

costs associated with maintenance of employment; provision of reasonable housing;

provision of appropriate nurturing and care for children or dependants; provision of

adequate heating, nutrition and clothing; coping with exceptional personal and

financial burdens arising from medical or social circumstances.

3.11.2 Factors that are accounted for during this process include the illness or medical

circumstances that result in financial hardship; the cost to the individual of providing

general medical and surgical services; medical, nursing and dental treatment;

physiotherapy; speech and language therapy; transport to hospitals and clinics;

medical aids and appliances; social medical circumstances (e.g. addictions such as

drink, drugs and gambling) and poor money management and social deprivation,

including poor home management.

3.11.3 With the individual’s consent the assessment process can also include advice from a

wide variety of sources including the applicant. In making the decision the PCRS staff

member does, in general, with the consent of the individual, liaise with the

applicant's doctors, allied health professionals and others.1

3.12 Medical Cards (or GP Visit Cards) awarded after an assessment of undue hardship or undue

burden have become associated with the phrase ‘discretionary Medical Cards’. The

definition of discretionary is misunderstood and undoubtedly a cause of confusion. There is

no difference between Medical Cards (or GP Visit cards) awarded purely on the basis of

income being below the guidelines and Medical Cards (or GP Visit Cards) awarded after an

assessment of undue hardship or undue burden.

3.13 Discretion is not a stand-alone exercise open to some and not to others; rather, it is an

integral part of the assessment process for a Medical Card application.

Medical Card – Amendments by GPs

3.14 In February 2012, the HSE entered an agreement with the Irish Medical Organisation (IMO)

whereby GPs, in certain circumstances, can make amendments to the Medical Card database

by temporarily extending card eligibility for four months, or by restoring eligibility to a patient

27

HSE Medical Card/GP Visit Card National Assessment Guidelines (January 2014)

30

who has had their eligibility removed due to not responding to renewal notices from the

HSE.28

3.15 In most cases where a GP amends the Medical Card database, third party verification is then

sought from the family or a nursing home, or the HSE initiates a review of eligibility.

3.16 In 2012, GPs reinstated eligibility in 800 cases where they were of the opinion that eligibility

had been removed in circumstances where the applicant had not responded to renewal

notices, and eligibility should be restored.

3.17 The database was amended in 200 cases where GPs were of the opinion that it was a sensitive

case. In such cases, eligibility is extended for a year. No third party verification is completed

routinely, since by definition the purpose of this action is to prevent correspondence being

issued to individuals not in a position to deal with such administration.

Emergency Medical Cards

3.18 An emergency Medical Card, valid for six months, can be issued within 24 hours of a doctor’s

report being made available in a number of circumstances, including for any patient who is in

palliative care and is terminally ill; a homeless person in need of urgent medical care; a person

with a serious medical condition in need of urgent medical care; a foster child in need of

urgent medical care; an asylum seeker with a serious medical condition in need of urgent

medical care.

3.19 Where a GP or consultant certifies that there is a terminal illness and the applicant is nearing

the end stage of life, the nature of the terminal illness is not a deciding factor in the issue of a

Medical Card, and no assessment of means applies.

Others with Medical Card entitlements

3.20 People aged 70 years and over

The Medical Card Scheme for people aged 70 years and over was revised with effect from 1

January 2014, resulting in changes to the qualifying gross income thresholds for Medical Card

eligibility.

28

Comptroller and Auditor General’s Report on the accounts of the public services 2012 (published September

2013)

31

3.21 Thalidomide and symphysiotomy

Any individual affected by the drug Thalidomide, or survivors of symphysiotomy, are entitled

to a Medical Card, regardless of means. This arrangement is not on a statutory basis.

3.22 Retention of Medical Cards

At present, if an individual has a Medical Card and they take up employment or participate in

a back-to-work scheme, then they may retain the Medical Card (for themselves and their

dependants) for three years after their change of circumstances, even in the event that they

do not continue to meet the means test or undue hardship requirements. This arrangement is

not on a statutory basis. It was announced in Budget 2014 that this system would be changed

via legislation to provide for an arrangement whereby such an individual would be given a GP

Visit Card instead of a Medical Card.

3.23 Hepatitis C/HIV

Any patient who contracted Hepatitis C or HIV from the use of human immunoglobulin-anti D

blood products is entitled to the same services as a Medical Card holder, and is also entitled to

other services including home nursing, home help, physiotherapy, counselling services and

such other services as may be prescribed by the Minister for Health. This is provided for under

separate legislation – the Health (Amendment) Act 1996 whereby the individual is entitled to a

Health (Amendment) Act Card rather than a standard Medical Card.

3.24 EU regulations

Under EU Regulation 1408/71 each EU Member State is responsible for its own social security

system and health service provision, and makes its own decision on the levels of social

security and healthcare benefits it offers. The broad principle of the Regulations is that, if an

individual moves from one country to another, then they are entitled to avail of health

services in their new country on the same basis as if they were living in their home country. In

practice, this means that people who are ordinarily resident in Ireland and who are covered by

the EU Regulations are entitled to Medical Cards in Ireland.

32

Medical Card Benefits

Medical benefits

3.25 The main services to which Medical Card holders are entitled free of charge include:

• GP/family doctor services

• Approved prescribed drugs and medicines (subject to prescription charges)

• In-patient and day-case treatment in public beds in public hospitals

• Out-patient services in public hospitals

• Medical and midwifery care for mothers and infants

• A maternity cash grant for each child born

• Dental, ophthalmic and aural services.

3.26 While Medical Card holders are entitled to get approved prescribed drugs and medicines free

of charge, they do nonetheless have to pay a prescription charge, which is currently €2.50 for

each item dispensed, subject to a maximum of €25 a month for an individual or a family.

3.27 A GP Visit Card entitles the holder to GP/family doctor services free of charge.

Non-medical benefits

3.28 Medical Card holders whose income is more than €10,036 pay the Universal Social Charge

(USC) but at a maximum rate of 4%.

3.29 The FOI application fee for a Medical Card holder in relation to non-personal information is

€10 (standard fee is €15).

3.30 Medical Card holders are eligible for reduced charges for appeals under the Access to

Information on the Environment (AIE) regulations.

3.31 Medical Card holder is an eligibility criterion for Higher Education Access Route (HEAR), a

college and university admissions scheme that offers places on reduced points and extra

college support to school leavers from socio-economically disadvantaged backgrounds.

3.32 Medical Card holders may also be exempt from paying school transport charges in publicly

funded second-level schools.

3.33 Medical Card holders may also be exempt from paying State exam fees in publicly funded

second-level schools.

3.34 Medical Card holders can avail of childcare at reduced rates under the Community Childcare

Subvention Scheme.

33

Medical Card statistics

3.35 Table 2 presents the numbers of full Medical Cards issued by year since 2004 and the numbers

of GP Visit Cards issued since 2005. At the end of July 2014, over 1.8 million Medical Cards

were issued, with a further 142,000 GP Visit Cards issued. Figure 4 illustrates the general trend

regarding the issuing of Medical Cards and GP Visit Cards since 2004.29

Table 2 Numbers of Medical Cards and GP Visit Cards issued 2004-July 2014

Year Medical Card

% population

covered GP Visit Card

% population

covered Total

2004 1,148,914 29.3% N/A N/A 1,148,914

2005 1,155,727 29.5% 5,079 0.13% 1,160,806

2006 1,221,695 28.8% 51,760 1.22% 1,273,455

2007 1,276,128 30.1% 75,589 1.78% 1,351,717

2008 1,352,120 31.9% 85,546 2.02% 1,437,666

2009 1,478,560 34.9% 98,325 2.32% 1,576,885

2010 1,615,809 38.1% 117,423 2.77% 1,733,232

2011 1,694,063 36.9% 125,657 2.74% 1,819,720

2012 1,853,877 40.4% 131,102 2.86% 1,984,979

2013 1,849,380 40.3% 125,426 2.73% 1,974,806

July ‘14 1,804,376 39.3% 142,668 3.11% 1,947,044

Figure 4 Trend in the issuing of Medical Cards and GP Visit Cards

29

Personal communication (A. Smith) 26 August 2014. Office of the National Director of Primary Care, Health

Service Executive

34

3.36 Figure 5 and Figure 6 illustrates the distribution of medical cards by age group comparing 2006

versus 2013.

Figure 5

Figure 6

3.37 The data tables and figures reveal that:

3.37.1 There are over 1.9 million Medical Cards and GP Visit Cards in circulation in Ireland as

of July 2014. This equates to 42.4% of the population.

3.37.2 Population coverage with Medical Cards (full eligibility) has increased steadily from

29.3% in 2004 to just under 40% as of July 2014.

35

3.37.3 The number of Medical Cards (full eligibility) in circulation in Ireland has increased by

over 57% in the period 2004 to August 2014.

3.37.4 In the 65-69 years age category, 52.4% of people have Medical Cards or GP Visit

Cards; 81.8% of those in the 70-74 age category have a Medical Card or GP Visit Card

and 99.2% of those aged over 75 years have a Medical Card or GP Visit Card.

3.38 Statistics on the number of discretionary Medical Cards are only available since 2009. Table 3

summarises the numbers of discretionary Medical Cards in circulation for the period 2009 to

July 2014, while displays the general trend over the same time period.

Table 3 Number and percentage of discretionary Medical Cards

Year

Medical

Card Discretionary % GP Visit Discretionary % Total

2009 1,478,560 79,625 5.4% 98,325 17,221 17.5% 1,576,885

2010 1,615,809 80,524 5.0% 117,423 17,501 14.9% 1,733,232

2011 1,694,063 74,281 4.4% 125,657 16,251 12.9% 1,819,720

2012 1,853,877 63,126 3.4% 131,102 15,833 12.1% 1,984,979

2013 1,849,380 50,294 2.7% 125,426 25,793 12.1% 1,974,806

Jul-14 1,804,376 65,993 3.7% 142,668 28,423 12.1% 1,947,044

Figure 7 Trend in the issuing of discretionary Medical Cards

36

3.39 There are a number of points worth noting:

3.39.1 The number of discretionary Medical Cards has steadily declined since 2010, but

against a background of an increase in the numbers of ‘regular’ Medical Cards.

3.39.2 The notable increase in the numbers of discretionary Medical Cards in the period

end of 2013 to July 2014 is accounted for by the Government’s recent decision to

reinstate cards that had been removed in the period 1 July 2011 to 31 May 2014.

3.39.3 The number of discretionary GP Visit Cards showed a small decline in the period

2009-2012, but since then has seen a noticeable increase.

Medical Card costs

Comptroller and Auditor General – eligibility for Medical Cards

3.40 The Comptroller and Auditor General’s Report on the accounts of the public services 2012

(published September 2013) included an analysis of the administration and costs of Medical

Cards.

3.41 The main components of Medical Card costs are payments to GPs and payments to

pharmacists. Payments to GPs are categorised as fees and/or allowances. Fees are payable in

relation to individual Medical Card patients registered on a per capita basis. GPs are also

entitled to claim out-of-hours payments (where patients are seen outside normal practice

hours) or where special services (excisions, suturing, vaccinations, catheterisation, family

planning etc.) are delivered.

3.42 Drugs and medicines approved under the General Medical Service (GMS) Scheme are provided

through retail pharmacies, and appliances are provided through Local Health Offices. The

pharmacist claims the cost of the medicine provided together with a dispensing fee. The costs

of the medicine provided comprise about three quarters of the total amount paid to

pharmacists.

3.43 In 2002, the HSE paid a total of €823 million to GPs and pharmacists in respect of services

provided to Medical Card users. By 2012, this had increased to just over €1.7 billion. Since

2005, total payments to GPs have ranged from €400 million to €450 million. In contrast,

payments to pharmacists increased from €551 million in 2002 to €1.3 billion in 2012.

37

3.44 The average cost peaked in 2008, when the HSE paid service providers an average of €1,285 in

respect of individuals in possession of a Medical Card. This had fallen to just over €1,000 per

person in 2012.

3.45 The Comptroller and Auditor General made a number of comments and recommendations to

the HSE in relation to the operation of the Medical Card system.

3.45.1 To conduct more internal reviews of Medical Card approvals, in order to ensure that

prescribed controls are being applied. As part of this [C&AG] examination, the

application of controls for the approval of Medical Cards was examined in relation to

a sample of 50 Medical Cards approved during 2012. The review identified

shortcomings in relation to 8% of the sample examined. Some of the shortcomings

resulted in the approval of Medical Card applications in circumstances where the

evidence would suggest that the applicant had not satisfied the eligibility criteria. In

other cases, where outgoings had been assessed, the applicant supplied no

documentation or inadequate documentation.

3.45.2 The available evidence suggests that there is a significant level of excess payment in

the Medical Card system. In the main, this arises as a result of changes in the card

holder’s circumstances over the validity period of the card. The HSE should conduct

reviews of random samples of Medical Card holders on an annual basis.

3.45.3 In order to calculate a reliable estimate of the level of ineligible card holding and the

relevant costs, it is important that all cases for inclusion in the process should be

selected randomly from the population of Medical Card holders at a specific time;

the sample size should be sufficiently large to yield reasonably reliable estimates;

the reviews should be carried out promptly following sample selection; a full review

of eligibility should be conducted; and an assessment of the cost associated with

ineligibility should be calculated with all results capable of being audited.

38

Other Primary Care Schemes and State supports

Drugs Payment Scheme

3.46 Under the Drugs Payment Scheme no individual or family in Ireland will pay more than €144

each calendar month for approved prescribed drugs, medicines and certain appliances for use

by that person or his or her family in that month.

3.47 The definition of a family for this scheme is an adult, their spouse, and any children aged

under 18 years. Dependants over 18 years and under 23 years who are in full-time education

may also be included.

3.48 The Scheme is aimed at those who do not have a Medical Card and normally have to pay the

full cost of their medication. It also applies to those who have a GP Visit Card. Anyone

ordinarily resident in Ireland can apply to join the Scheme, regardless of family, financial

circumstances or nationality.

Long Term Illness Scheme

3.49 People with certain long-term illnesses or disabilities can register under the Long Term Illness

Scheme. This scheme allows a patient to get drugs, medicines, medical and surgical appliances

directly related to the treatment of their illness free of charge. It does not depend on an

individual’s income or other circumstances, and is separate from the Medical Card and the GP

Visit Card. A patient qualifies if they are ordinarily resident in Ireland, hold a Personal Public

Service Number (PPSN) and have one of the following illnesses and disabilities:

• Acute leukaemia

• Mental handicap

• Cerebral palsy

• Mental illness (in a person under 16)

• Cystic fibrosis

• Multiple sclerosis

• Diabetes insipidus

• Muscular dystrophies

• Diabetes mellitus

• Parkinsonism

• Epilepsy

• Phenylketonuria

• Haemophilia

• Spina bifida

• Hydrocephalus

• Conditions arising from the use of

Thalidomide.

39

Dental/ophthalmic and aural services

3.50 The Dental Treatment Services Scheme (DTSS) provides access to dental treatment for adult

Medical Card holders (over 16 years of age). A free oral examination every calendar year and

free emergency dental treatment for relief of pain and sepsis are available to all eligible

patients. This includes two fillings per annum and all extractions.

3.51 Most other treatments require prior approval, and patients with special needs, as well as high-

risk patients and those who have greater clinical needs, receive priority. The DTSS provides

treatment for periodontal/gum disease in cases where care is especially warranted. This

includes clients who are pregnant, have diabetes or immune-compromising conditions, or

require relevant surgical procedures such as cardiac surgery and joint replacements. Approval

for periodontal treatment may be given by the local Principal Dental Surgeon for these and

other high-risk or special needs groups.

High Tech Drug Scheme

3.52 Arrangements are in place for the supply and dispensing of high-tech medicines through

community pharmacies. High-tech medicines are, typically, expensive medicines that have

been produced by biotechnological means, or contain new drugs with significant new

therapeutic uses, or require prescribing by a consultant in a hospital setting.

3.53 High-tech medicines are generally only prescribed or initiated in hospital, and typical examples

would include drugs to prevent transplant organ rejection, as well as some cancer treatments

and assisted reproductive technology medicines. The medicines are purchased by the HSE and

are supplied through community pharmacies, and pharmacists are paid a patient care fee. The

cost of the medicines and patient care fees are paid by the PCRS.

3.54 If an individual has a full Medical Card, or if the medicine is being used to treat one of the

illnesses specified under the Long Term Illness Scheme, then there is no charge for their high-

tech medicine. Patients with eligibility under the Health Amendment Act are also exempt

from a charge. All other patients are required to pay the monthly Drugs Payment Scheme

(DPS) contribution (currently €144).

40

Community Ophthalmic Services Scheme

3.55 Under the Health Service Executive Community Ophthalmic Services Scheme, adult Medical

Card holders and their dependants are entitled, free of charge, to eye examinations and

necessary spectacles/appliances. Claims by optometrists/ophthalmologists are paid by the

PCRS. Claims for spectacles provided under the Children’s Scheme are also paid by the PCRS.

Tax relief and medical expenses

3.56 Any individual who incurs medical expenses that are not covered by the State or by private

health insurance may claim tax relief on some of those expenses. These expenses include the

costs involved in nursing home care. However, it is not possible to claim tax relief for any

expenditure which has been, or will be, reimbursed by another body, such as the VHI, Laya

Healthcare, Hibernian Aviva Health, the Health Service Executive or other body or person; has

been, or will be, the subject of a compensation payment; or relates to routine dental and

ophthalmic care.30

• Costs of doctors’ fees and consultants’ fees

• Items or treatments prescribed by a doctor or consultant

• Maintenance or treatment in a hospital or an approved nursing home

• Costs of speech and language therapy carried out by a speech and language therapist for a

qualifying child

• Transport by ambulance

• Costs of educational psychological assessments carried out by an educational psychologist

for a qualifying child

• Certain items of expenditure in respect of a child suffering from a life-threatening illness

• Kidney patients' expenses

• Specialised dental treatment

• Routine maternity care

• In-vitro fertilisation.

The following, where prescribed by a doctor, also qualify for medical expenses relief:

• Drugs and medicines

• Diagnostic procedures

• Medical, surgical, dental or nursing appliances

• Hearing aids

• Orthopaedic bed or chair

30

http://www.revenue.ie/en/tax/it/leaflets/it6.html

41

• Wheelchair or wheelchair lift (no relief is due for alteration to the building to facilitate a lift)

• Glucometer machine for a diabetic

• Engaging a qualified nurse in the case of a serious illness

• Physiotherapy, chiropody/podiatry services or similar treatment

• Cost of a computer where there is medical evidence that it is necessary to help a person

with a severe disability to communicate

• Cost of gluten-free food for coeliacs. As this condition is generally ongoing, a letter (instead

of prescription) from a doctor stating that the individual is a coeliac sufferer is acceptable.

3.57 Tax relief is also available for premiums paid for health insurance. Tax relief on private health

insurance premiums is limited to €1,000 for each adult and €500 for each child.

42

4. THE VOICE OF THE PUBLIC, THE PATIENT AND REPRESENTATIVE PANELS

Introduction

4.1 In order to assess the public’s opinion as to whether or not medical needs should be taken into

account in the provision of Medical Cards, a public consultation process has been carried out

by the HSE in order to inform the development of a new policy framework for Medical Card

eligibility. There have been two independent component parts of the public consultation

processes.

On-line public consultation exercise

4.2 In June 2014 the Primary Care Division of the HSE invited submissions using an on-line form.

The survey was launched on 6 June 2014 and submissions closed on 30 June 2014. A total of

3,248 responses were received and analysed by the Division of Population Health Sciences,

Royal College of Surgeons in Ireland.

4.3 There were 20 written submissions by disease association/patient advocacy groups to the

Expert Panel; these submissions were too large to be qualitatively analysed by the online

process and were separately analysed by Dr Marie Eagleton, HSE Medical Scientist (this report

is titled Patient Association and Patient Advocacy Group Submissions).

The Patient Representative Forum on Medical Card Eligibility

4.4 The Patient Representative Forum on Medical Card Eligibility was hosted by the HSE National

Advocacy Unit and was held in the Ashling Hotel, Dublin on 26 August 2014.

A summary and the results of each of these exercises are presented below.

On-line public consultation

4.5 In May 2014, the Primary Care Division of the HSE established an on-line public consultation

for submissions to inform the development of a new government policy framework for

Medical Card eligibility. Submissions were requested from the public, patient representative

groups and professional bodies, to inform the work of the Expert Panel in examining the range

of medical conditions that should be considered for inclusion in this new policy framework.

The Public Consultation entitled ‘Have your say on the medical needs that should be taken into

account in the provision of Medical Cards’ invited submissions to be made using an online form

or via email, audio or by post. The closing date for submissions was Monday, 30 June 2014. A

total of 3,248 responses were received via the on-line form.

43

Methods

4.6 The survey asked respondents to provide contact information, such as name, group they were

representing (if applicable), address, telephone number and email address. The remainder of

the survey comprised 11 open-ended (free text) questions and 8 pre-coded questions.

Respondents were asked to indicate if they were a person living with a condition, or if they

were an individual or group connected in some other way. Detailed information on medical

needs that arise based on these conditions was elicited by asking participants to provide the

following information in free text comment boxes: medical condition(s); reasons why this

condition should be considered on the basis of medical need; GP visits e.g. number, frequency

of visits etc.; medicines e.g. range of medications required; therapies e.g. occupational

therapy, physiotherapy and other therapy support needs and frequency; aids and appliances

e.g. home support equipment and other medical devices; in-patient treatments, e.g., hospital-

based care needs; respite care requirements; other. Participants were then asked to provide

ratings (from ‘Not at all’ to ‘Very much’) of how much their condition typically effects their

normal activity; physical function; mental health; social function; energy; pain; work. A final

free text comment box prompted participants to include any further relevant information they

wished to add. All records were anonymised before analysis was undertaken.

Analysis

4.7 This report presents analysis of the 3,248 on-line submissions. Descriptive statistics of

responses are presented, where quantitative summation was possible. Free text responses

were analysed qualitatively. Qualitative analysis involved assigning categories based on the

criteria of repetition, recurrence and forcefulness of various topics or themes in the responses

to the open-ended questions. These categories were used to code the open-ended question in

the analysis. The open-ended responses were further analysed to provide exemplars of a

particular topic or theme and were used to highlight in this report the key issues raised.

Summary of key findings

4.8 The quantitative analysis indicated high health service utilisation among this group, with 40%

visiting the GP between five and twelve times a year. A small minority (less than 2%) do not

take any medication, while a third of respondents take five or more medications. Almost half

of respondents indicated needs for hospital services; 50.5% of respondents and 30% of

respondents indicated need for in-patient and out-patient services, respectively. Other

therapy (including alternative and complementary therapies) as well as technical aids and

appliances are also an area of great need for people. Just over half mentioned the need for

physiotherapy and almost 12% mentioned needing some form of complementary therapy;

44

42.5% mentioned use or need of multiple aids and appliances. These findings combine to

highlight the broad range of services required to support individuals and their families not only

to live a life with chronic illness, but to live a life that is full, complete and inclusive, providing

equitable opportunity and choice in all aspects of life. Qualitative analysis of the free text

responses provides insight into the challenges faced by people in accessing the appropriate

services at the appropriate time. Poor health and unmet health needs were reported as having

a domino effect on all other aspects of an individual’s life, ultimately impacting on society as a

whole.

Financial impact

4.9 Respondents alluded to difficult decisions being made between accessing GP services for their

children or another family member to the detriment of their own health; foregoing necessary

GP and/or hospital visits due to cost. A recurring theme also was restricting medication use,

again due to cost. Going abroad to source cheaper medications or specialist care not available

in Ireland was a strategy followed by some. Sourcing medication or specialist care in this way

added to the financial burden for those with the health condition and their families, and also

created logistical, travel and emotional stress for the individual and their family.

Emotional impact

4.10 The sense of worry, anxiety and stress associated with access (or not being able to access)

appropriate health care, and financial concerns associated with cost of care and medications

were prominent throughout the submissions.

Family impact

4.11 The impact on family was also clear. Respondents noted how other children within the family

may not receive equal attention, or how families may not be able to take holidays due to

providing care and the cost of care of one sibling. Stress and strain in caring for family

members was reported in addition to the huge responsibility placed on families to administer

medical/therapeutic care at home.

Impact on work/schooling

4.12 The individual is often faced with the decision to work (and lose the much-needed Medical

Card) or to keep the card but not work. The submissions indicate the negative impact that not

working or missing work due to illness can have on the individual’s sense of self, quality of life,

and ability to contribute in a meaningful way both economically and socially. Education is also

45

impacted through reduced attendance at school, due to illness or hospital/clinic

appointments. Participation in school life is affected by access to appropriate supportive aids,

and also the extent to which recreational/sporting activities can be inclusive of all children. In

many cases, children with chronic illness are excluded from such activities and it is the family

who supplement these activities outside school hours.

Conclusion

4.13 Overall, the findings of the online public consultation survey highlight that having a chronic

illness is not about diagnosis alone. Respondents in the consultation indicated that the

overriding challenge for individuals and families alike is accessing the required health services

while also balancing all other aspects of life (work, family, mental health). In particular, the

challenge most prominently reported is the ongoing difficulty of trying to balance the

individual and/or family budget to enable access to care for all as needed. As one participant

surmised:

“It’s hard enough trying to cope with a chronic illness without the expense and stress making

my future look so bleak.”

Patient association and patient advocacy group submissions31

4.14 There were twenty submissions by disease association/patient advocacy groups to the Expert

Panel on Medical Card Eligibility, and there were six individual submissions. The twenty group

submissions are listed below. All diseases and conditions were chronic, lifelong or had a

relapsing-remitting course. The submissions varied in the level of detail supplied, but a number

of common themes emerged.

4.14.1 Respondents strongly urged that allocation of Medical Cards should be based on

medical need rather than having a medical condition. The prevalence of a condition

should not be a basis for entitlement to a Medical Card, and respondents do not want

to see a situation where there would be competition between conditions for Medical

Cards. An objective assessment of medical need would avoid this; Medical Cards

should be about medical need, and personal financial circumstances should not be

taken into account when assessing for a discretionary Medical Card.

31

Twenty written detailed submissions were received by disease association/patient advocacy groups and a

further six were submitted by individuals.

46

4.14.2 It was acknowledged that medical need could be transient in nature and that a

mechanism for rapid assessment of medical need would be developed. This would

facilitate issue of Medical Cards when they were needed, and withdrawal of these

cards if and when the disease was in remission.

4.14.3 It was noted that accessing community-based services without a Medical Card is

difficult, and that paying for necessary aids and appliances is financially burdensome.

The following is a quote from the Irish Cancer Society Submission:

“…patients who do not have a Medical Card face significant costs to care for

themselves at home. What is particularly stark is that without a Medical Card they do

not have guaranteed access to a public health nurse or allied community-based

professionals.”

4.14.4 Many of the respondents indicated that the current system for allocation of medical

cards did not discern the true cost of chronic illness. Some submissions provided

information on the cost of these illnesses to patients and their families, which

significantly reduces their disposable income. The prospect of withdrawal of

discretionary Medical Cards by those who already have them provokes a lot of anxiety

in families.

4.14.5 Many patients with chronic conditions who do not have Medical Cards pay up to the

maximum for prescription drugs every month and visit GPs more frequently than

normal, which causes undue financial hardship. Furthermore, in addition to paying the

maximum for medication, some patients pay for essential supplements and drugs not

covered by the Drugs Payment Scheme (DPS), and may often have to pay for other

therapies: chronic disease incurs a lot of expense.

4.14.6 There are anecdotal reports that people with chronic conditions who do not have

Medical Cards do not fully comply with medication, or attend the GP or hospital

appointments with necessary regularity, for financial reasons.

4.14.7 The respondents indicated that many people with chronic illnesses who already have

Medical Cards are uninclined to take up employment because they may lose their

Medical Card on financial grounds. This further increases their dependency on the

State and has a detrimental effect on their wellbeing.

47

4.14.8 It was noted by some respondents that having a Medical Card opens up other non-

medical benefits such as free school bus service, and decoupling of these services was

urged.

4.14.9 Many of the submissions commented on the administration of Medical Cards and how

difficult it is for the individual to navigate the system, which is seen as overly

bureaucratic, inaccessible and insensitive in its approach to ill people.

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